Tuesday, April 24, 2012

Simple Solutions Will Not Help New Brunswick Students with Autistic Disorder and Other Complex Challenges

New Brunswick's Gordon Porter and his associates with the NB Association for Community Living are now in charge of New Brunswick's inclusive education system. The Gordon Porter Inclusive Education Review taking place in New Brunswick will impose their beliefs on NB students with disabilities including those with severe, complex disorders like my younger son who has severe autistic disorder with profound developmental delays. The review itself is unlikely to do anything except reiterate the Porter/NBACL inclusion beliefs which have not changed in 30 years. Although present for one of the Porter/NBACL review sessions in Fredericton it was made clear that the review did not want to hear from me; a known critic of those beliefs.

Any doubts about what Mr Porter means by inclusion are put to rest by his own admission, in a recent presentation in Newfoundland, that inclusion in Porter World is simple, very simple .... everybody, regardless of the complexity or severity of their condition, regardless of their level of understanding or learning ability, regardless of their behavioral or sensory challenges belongs in the regular classroom. For Gordon Porter, in his own words, inclusion is that simple. As the father of a severely autistic, profoundly developmentally challenged son I wish my son's realities were as simple as Gordon Porter's beliefs. But they aren't. What follows is Gordon Porter/NBACL inclusion in Mr Porter's own words:

CORNER BROOK — Gordon Porter believes inclusion is the most natural thing in the world.
The educator and director of Inclusive Education Initiatives presented a session on inclusive education at the Greenwood Inn and Suites on Thursday.
Porter, who is also the editor of the Inclusive Education Canada website inclusiveeducation.ca, spoke to parents, educators and agency professionals who deal with children with special needs at the pre-conference for the Newfoundland and Labrador Association for Community Living Conference taking place in the city today and Saturday. The session was sponsored by the Community Inclusion Initiative.

Porter’s session revolved around the theme of parents and teachers working together to make inclusion work.“It means kids go to their neighbourhood schools with kids their own age in regular classes,” said Porter.“If you’re seven years, old you go to the school just down the street. You go in a class with other seven-year-olds, and you’re supported if you have extra needs.
“It’s so simple, it’s that simple,” said Porter."

My son's autistic disorder challenges are not simple. The extreme, everybody in the regular classroom inclusion model, is simple because evidence to the contrary is ignored by those who have pushed it. That is a simple fact.

Gordon Porter is simple-minded to hold this philosophy as being the ultimate in equal rights for persons with disabilities. You could give me a flowered shirt and an expensive camera but I am still not going to truly be a part of a Japanese tourist group! Schools are meant for education, first and foremost (which I am often told when I ask about social skills training groups for my clients during school time)... what are these children being taught when expected to sit in a room with peers who are cognitively a lot older (and so is the subject matter). Keep up your advocacy Harold! You da man!

Dr. Gordon doesn't seem to know much about severely autistic students. I wonder if he could articulate for us how exactly schools are supposed to include severely autistic children who scream all day, bite others, throw chairs, beat themselves,can't sit in chairs, won't listen to reprimands of "please be quiet" or "wait your turn."

Oh for pete's sakes, this doc needs to spend a day with severely-autistic individuals who have self-injurious behaviors and seizure issues. My son was "included" in regular public education for a few years and it was a major challenge. He could only attend with a one to one nurse, who was trained (by me) to handle him at the public school site. Even then, the public school was in daily shock over his behaviors and seizures. The school tried hard, and they were very kind to him, but it wasn't something educational. It was mostly just warehousing him there, while the nurse would walk him around campus. The nurse later told me a few teachers made rude comments about my son, which was quite hurtful to me. A student in one class confided in me that when the nurse and my son would walk around campus, the teacher would complain about my son "making funny loud sounds." And how "irritating it was."

Is the doctor not aware of the Supreme Court of Canada ruling in Brant v Eaton - the diability placement law in Canada:

Sayeth the court:

"While integration should be recognized as the norm of general application becauseof the benefits it generally provides, a presumption in favour of integrated schoolingwould work to the disadvantage of pupils who require special education in order toachieve equality …. Integration can be either a benefit or a burden depending onwhether the individual can profit from the advantages that integration provides."

As such, if clinically proven integration is not legal and parents have a legal basis for remedy.

101 Noteworthy Sites on Asperger's & Autism Spectrum Disorders

Facing Autism on Facebook

Why ABA For Autism?

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
Joachim Hallmayer, MD, associate professor of psychiatry at Stanford University in California

Even Out Environmental and Genetic Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute Researcher

My Autism Pledge For Conor

Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

Dr. Jon Poling : Blinders Won’t Reduce Autism

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.